Lauren has control of her life back
Sept, '98, updated 2/5/99, 8/14/00, 6/1/01, 5/24/05
Lauren's story is a success story for all of the caring people who reached out to us and helped us make the best decisions for our Lauren. Both CamelsRFun and the Insulin-Pumpers list were there when we needed it most. It was not the medical professionals who held our hand when we needed it, it was the caring parents of other children who had gone before us on the Pumper's Journey.
Lauren was 10 years old when she was diagnosed with Diabetes on March 11, 1997. As all parents are, we were devastated. It became clear to my husband, Nathan, and myself that if we wanted the best odds of a long healthy life for Lauren that we needed to work towards maximum control without undue restrictions on her life. The insulin pump seemed to be the only answer.
Nathan and I were also very concerned about the rebellious years that we often hear about. We have heard so often about teenagers who rebel against the control of parents as the parents attempt to continue to control the child's blood sugars. We learned that it is not all uncommon for teenagers refusing to do BG's because a bad number only means another shot or teenagers that simply don't cover what they eat with insulin. Understandably, they are burned out from the strigent discipline and routine required to maintain satisfactory control with multiple daily injections. I wanted to lift the burden from Lauren's shoulders as much as I possibly could. I thought the pump might lift the burden.
After about four months of shots, my goal became getting Lauren on the pump in the Summer of 98. During the school year Lauren and I spoke about it together. She absolutely DID NOT WANT THE PUMP! She did not want to have anything attached to her. She is very active and she did not think that the infusion would stay in. And most importantly, as a 7th grader, she did not wish to explain her pump to her classmates.
I was pretty much in despair. I wanted her to have the pump as badly as she DIDN'T want the pump. I found CamelsRFun on the internet one night. I was so moved by the stories that others had shared. CamelsRFun gave me the resolve to move forward. Fortunately, Lauren was introduced to Sarah, a 13-year old pumper, who spoke to Lauren about how wonderful the pump was. Lauren finally conceded that she would try the pump only in the SUMMER and only for one month. She still did NOT want the pump and hers was a strategy to appease me. I hoped that the pump would be as marvelous as others had claimed, then maybe Lauren would be sold before the thirty days were up. It was certainly a risky venture, but I had to give it a chance.
The day before she was to get the pump, Amy, an 18 year old pumper, came into our life like a breath of fresh air. She was darling with a smile that lights up a room. She won Lauren over immediately. Amy told Lauren that she also first hated the idea of the pump and her parents also pushed the issue on her when she was 16. She said she knew that they did it only because they loved her so much. Now, Amy loves the pump and says that her only regret was that someone had not told her earlier about how truly wonderful the pump is.
The first two weeks on the pump saw a great deal of adolescent fireworks. Lauren had to work through many of the same issues that she faced when she was first diagnosed.... She insisted that she not be made to wear the pump at her birthday party at Astroworld, because she did not want the constant reminder that she was diabetic and she did not want to worry about the water rides. When her birthday party finally came, two weeks after the start of the pump, her attitude miraculously shifted. She wore the pump and when the infusion came out, apparently because she bungee jumped, Lauren did NOT want shots, she wanted to go home, from her party, and get a new infusion set started!
We have now been on the pump for nearly three months and I can say, without a doubt, that Lauren loves her pump. Instead of being restrictive, it is liberating. It is so easy to disconnect and reconnect that little of her daily activities have been at all inconvenienced. She went to an all night church party last week: pizza at midnight, movies at 1 am, go-carts from 3-7 am, junk food throughout. NO PROBLEM, just punch the buttons and enjoy oneself with healthy BGs. No more feeling deprived... no more thinking about when and limitations of how much one can eat. Adjust the temporary basals and no more lows.
Lauren has gone back to school, with her pump. Her closest friends know, but Lauren still chooses to put the pump tubing down the leg of her pants and hide her pump in her sock! It was a trick we learned from Sarah. Lauren is taking her own pace about discussing her diabetes and pump with those who do not know her well. Thus far, the reception from her peers has been consistently positive. I think Lauren feels better about herself now than she did before being diagnosed with diabetes. After all, she feels like she has the control of her life back.
Lauren said to another child with diabetes that the pump is the best thing to happen to her since she was born! She is far move independent and competent with managing her blood sugars. And we are so proud of her. Lauren did not ask to be brave, but she has responded to her diagnosis with admirable resilience. She is truly a happy 7th grader now.
I so appreciate the reinforcement that CamelsRFun gave me in my darkest hour. And the members on the Insulin-Pumpers list have been so wonderful in helping me through the fine points of insulin pumping. I must also add that Cindy was the most thoughtful, knowledgable and empathetic pump educator that we could ever hope to have. Many thanks to all...it was not an easy journey, but we are now into the "Happily ever after" part!
Lauren has been pumping for the last 8 months. We have had a few challenging times, but it remarkable how a child can adapt. We have finally found the right infusion set for us (the silhouette) and our basals are pretty fine-tuned. Pumping has been going smoothly for about 4 months. Lauren's A1c this week was 6.5 and I could not have hoped for better! Sure, it takes blood tests to get to 6.5, about 4-8X a day, but it is worth it. Lauren pretty much eats what and when we wants. And she rarely experiences lows or numbers above 200. She feels and looks great!
We have learned about reducing basals for exercise and Lauren is a master of bolusing technique! She looks at the food and "guesses" and 2-2.5 hours later, her Bgs are back to between 90 and 150...almost magically! Depending on the day, and what is happening, her total insulin ranges from 35 to 65! (We try to discourage 65 days, but at Christmas, the cookies and parties were awfully good! and pigging out was the order of the day!)
Lauren no longer feels deprived or burdened (for the most part) and she has adjusted well in school. There have been no problems at school.
We are anxious for the cure, but until then, the pump has made coping with diabetes a lot easier for Lauren. We strongly recommend the pump to any conscientious parent with a child, of any age, who will test frequently. You will be amazed at the difference that it makes in a child's life!
Lauren is now 14 and she is starting High School tomorrow. In the beginning, 2+ years ago I was very closely involved with Lauren's diabetes management with the pump. Together we learned all that we could. I am proud to say that now Lauren is pretty much flying solo. And in the last 2 years we have had A1c's between 6.2 and 6.9 - her last A1c on 8/10/00 was 6.6 - essentially all by herself!
Lauren is 100% 14 (parents of teenagers will understand), even with respect to being typically irresponsible, but there is almost never being 14 about diabetes control, because the pump allows her to be a typical 14 year old.
Lauren has earned an almost magical ability to manage her diabetes - 90% of her boluses bring her under 160 at the next test. It is part of life and life is pretty good.
This month is Lauren's 15th birthday and her third anniversary for pumping. I realized, as someone mentioned reading Lauren's story, that I have left out a huge part of her life. Lauren is a competitive cheerleader and has been since she was in first grade. She cheers for Storm in Southwest Houston. Her team is highly competitive, this year winning two National championships, beating over 100 teams in her division including other teams considered to be the best in the nation.
Competitive cheerleading, not school cheerleading is very rigorous. To be on Lauren's team each girl is expecting to do multiple toe touch jumps with standing back tucks, and elite level tumbling passes. Two girls can base one flyer in complex stunts including executing double downs. Lauren typically is at the gym 2-4X a week and we travel to out-of-town competitions up to eight times a year as well as compete in local competitions. With all this physical activity, the pump has not gotten in the way, instead it has enabled her to better control her blood sugars. Several hours before a competition, Lauren typically spikes, but it is so much easier to deliver an accurate bolus to bring her within normal range to compete.
Lauren now has a "boyfriend." He is Sean and he also has diabetes. When he came into Lauren's life, his mother had unsuccessfully tried to persuade him to try the pump. After a month of hanging around with Lauren, he was ready to try it. Sean is a typical active 17 year old and he is also delighted with the pump. He has been pumping for four months and there is no way he would go back to shots. Recently, his pump malfunctioned and he had to go back to shots for a few days and he HATED IT! I am pleased that another kid who has to suffer with diabetes at least gets to face it with a pump. His control and his motivation to control has improved. His mom says that for the first time, he is really into his diabetes and understanding how to control it. Ironically, Sean's first doctor would not let Sean pump, because he was not "responsible." Thank goodness for his current doctor, Dr. Brosnan, who was willing to let Sean try. Sean has been extremely mature and responsible since getting the pump. It has made a tremendous difference in Sean's life and his diabetes control.
Life is never easy with teenagers and Lauren's A1c's are slipping into the low 7's but I am so grateful that both Sean and Lauren can face life with diabetes with a pump. At this time there is no better alternative.
Update May 24, 2005
Well, it has been almost 4 years since I have updated Lauren's story. To say that we have been through a great deal would be an understatement. I do not want to go into the details, but Lauren spun out of control. (I will in a private phone call or email) Thankfully, because she always had her pump with her and because she was so experienced at managing her diabetes with her pump, her A1cs generally stayed in the low to mid 7's. Throughout all of her rebellion, she never experienced a medical emergency. I firmly believe that had she been on shots or inexperienced at the pump, she would have had a much more difficult time.
Eighteen months ago, Lauren was sent to a therapeutic boarding school, which is something neither her father nor I ever thought would ever happen. We found a wonderful place where we thought they would keep her safe and could address all of her issues including diabetes management. Ironically, because Lauren feels so normal with the pump, her living with diabetes has not been area in which she rebelled. At this school, Lauren underwent intense nutritional therapy and counseling.
It was a gamble but it was a tremendous success. Lauren now attends St. Edwards University in Austin with a merit scholarship and just received her grades for her first semester. She made the Dean's List with a 3.5/4.0! We are so proud! She has grown into an absolutely lovely and balanced person!
Moreover, as a part of her nutritional therapy, she can cut her insulin usage in half and has maintained normal thyroid function even though 2.5 years ago, she was tested with autoimmune antibodies against her thyroid. She did not miss a day of school this spring due to sickness or diabetes issues. She has no other health problems even though she has been diabetic for over eight years.
Part of the reason for my adding this update is because I believe a significant number of kids with diabetes go through an irrational rebellious time during their teens and often this is the time they do tremendous damage to their bodies with their failure to control their diabetes. There are things that parents can do - to help mitigate the damage. At the minimum, the pump certainly helped Lauren. I would advocate getting a child on a pump as early as possible, if the parents are up to it, so that when the rebellious years happen, the child will be comfortable in effectively managing their diabetes with the pump. Lauren and I also think the boarding school and nutrition made a tremendous difference
Lauren update 1/20/08
When I read about people, I always wonder about "Where are they now?" and that is why I continue to update. Lauren is now 21 yrs old. She is a beautiful woman in all ways. She is still using the pump (10 years) and will be getting a CGMS in the near future. Since she has been in college, she has maintained mid-7 A1cs, except for a bout of very frustrating 8's. Lauren has no complications. She has perfect vision and has gained and lost weight to a great weight. I think because there were no "eating issues", as a teen, i.e., restrictions caused by diabetes, I think Lauren has naturally matured into a very healthy eating lifestyle. For philosophical reasons, she is a vegetarian (and she also rescues dogs!) Off and on, she works out but that is not the constant that her otherwise healthy lifestyle is. She does not smoke or drink, which was not always the case. In other words, Lauren has evolved into about the best lifestyle that a young person with diabetes can have. And I am so proud! It was not an easy journey!
Lauren is still in college at St. Edwards and although there have been some bumps in the road, she is doing well with a 3.25/4. She is taking it more slowly than others perhaps, but she loves her major- Digital Media Management and she has the right attitude.
Lauren is always on top of her diabetes and she accepts it as part of her life. Her life is great. In 11 years, she has never been hospitalized for any reason (except initial diagnosis) and she is the picture of health. I know when she was first diagnosed, I worried about what the future would hold... the future has been good and the pump played a major part in helping Lauren maintain a top quality of life.
Nonetheless, we cannot wait for the cure!
I would be glad to speak to anyone with a child with similar challenges.
Diane Dunham Massey
4402 Chipping Court
Sugar Land, TX 77479-2945